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Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study

BACKGROUND: Using smartphones to enroll, obtain consent, and gather self-reported data from patients has the potential to enhance our understanding of disease burden and quantify physiological impact in the real world. It may also be possible to harness integral smartphone sensors to facilitate remo...

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Autores principales: Crouthamel, Michelle, Quattrocchi, Emilia, Watts, Sarah, Wang, Sherry, Berry, Pamela, Garcia-Gancedo, Luis, Hamy, Valentin, Williams, Rachel E
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6231853/
https://www.ncbi.nlm.nih.gov/pubmed/30213779
http://dx.doi.org/10.2196/mhealth.9656
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author Crouthamel, Michelle
Quattrocchi, Emilia
Watts, Sarah
Wang, Sherry
Berry, Pamela
Garcia-Gancedo, Luis
Hamy, Valentin
Williams, Rachel E
author_facet Crouthamel, Michelle
Quattrocchi, Emilia
Watts, Sarah
Wang, Sherry
Berry, Pamela
Garcia-Gancedo, Luis
Hamy, Valentin
Williams, Rachel E
author_sort Crouthamel, Michelle
collection PubMed
description BACKGROUND: Using smartphones to enroll, obtain consent, and gather self-reported data from patients has the potential to enhance our understanding of disease burden and quantify physiological impact in the real world. It may also be possible to harness integral smartphone sensors to facilitate remote collection of clinically relevant data. OBJECTIVE: We conducted the Patient Rheumatoid Arthritis Data From the Real World (PARADE) observational study using a customized ResearchKit app with a bring-your-own-device approach. Our objective was to assess the feasibility of using an entirely digital approach (social media and smartphone app) to conduct a real-world observational study of patients with rheumatoid arthritis. METHODS: We conducted this observational study using a customized ResearchKit app with a bring-your-own-device approach. To recruit patients, the PARADE app, designed to guide patients through a series of tasks, was publicized via social media platforms and made available for patients in the United States to download from the Apple App Store. We collected patient-reported data, such as medical history, rheumatoid arthritis-related medications (past and present), and a range of patient-reported outcome measures. We included in the assessment a joint-pain map and a novel objective assessment of wrist range of movement, measured by the smartphone-embedded gyroscope and accelerometer. RESULTS: Within 1 month of recruitment via social media campaigns, 399 participants self-enrolled, self-consented, and provided complete demographic data. Joint pain was the most frequently reported rheumatoid arthritis symptom to bother study participants (344/393, 87.5%). Severe patient-reported wrist pain appeared to be inversely linked with the range of wrist movement measured objectively by the app. At study entry, 292 of 399 participants (73.2%) indicated a preference for participating in a mobile app–based study. The number of participants in the study declined to 45 of 399 (11.3%) at week 12. CONCLUSIONS: Despite the declining number of participants over time, the combination of social media and smartphone app with sensor integration was a feasible and cost-effective approach for the collection of patient-reported data in rheumatoid arthritis. Integral sensors within smartphones can be harnessed to provide novel end points, and the novel wrist range of movement test warrants further clinical validation.
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spelling pubmed-62318532018-12-03 Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study Crouthamel, Michelle Quattrocchi, Emilia Watts, Sarah Wang, Sherry Berry, Pamela Garcia-Gancedo, Luis Hamy, Valentin Williams, Rachel E JMIR Mhealth Uhealth Original Paper BACKGROUND: Using smartphones to enroll, obtain consent, and gather self-reported data from patients has the potential to enhance our understanding of disease burden and quantify physiological impact in the real world. It may also be possible to harness integral smartphone sensors to facilitate remote collection of clinically relevant data. OBJECTIVE: We conducted the Patient Rheumatoid Arthritis Data From the Real World (PARADE) observational study using a customized ResearchKit app with a bring-your-own-device approach. Our objective was to assess the feasibility of using an entirely digital approach (social media and smartphone app) to conduct a real-world observational study of patients with rheumatoid arthritis. METHODS: We conducted this observational study using a customized ResearchKit app with a bring-your-own-device approach. To recruit patients, the PARADE app, designed to guide patients through a series of tasks, was publicized via social media platforms and made available for patients in the United States to download from the Apple App Store. We collected patient-reported data, such as medical history, rheumatoid arthritis-related medications (past and present), and a range of patient-reported outcome measures. We included in the assessment a joint-pain map and a novel objective assessment of wrist range of movement, measured by the smartphone-embedded gyroscope and accelerometer. RESULTS: Within 1 month of recruitment via social media campaigns, 399 participants self-enrolled, self-consented, and provided complete demographic data. Joint pain was the most frequently reported rheumatoid arthritis symptom to bother study participants (344/393, 87.5%). Severe patient-reported wrist pain appeared to be inversely linked with the range of wrist movement measured objectively by the app. At study entry, 292 of 399 participants (73.2%) indicated a preference for participating in a mobile app–based study. The number of participants in the study declined to 45 of 399 (11.3%) at week 12. CONCLUSIONS: Despite the declining number of participants over time, the combination of social media and smartphone app with sensor integration was a feasible and cost-effective approach for the collection of patient-reported data in rheumatoid arthritis. Integral sensors within smartphones can be harnessed to provide novel end points, and the novel wrist range of movement test warrants further clinical validation. JMIR Publications 2018-09-13 /pmc/articles/PMC6231853/ /pubmed/30213779 http://dx.doi.org/10.2196/mhealth.9656 Text en ©Michelle Crouthamel, Emilia Quattrocchi, Sarah Watts, Sherry Wang, Pamela Berry, Luis Garcia-Gancedo, Valentin Hamy, Rachel E Williams. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 13.09.2018. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mhealth and uhealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Crouthamel, Michelle
Quattrocchi, Emilia
Watts, Sarah
Wang, Sherry
Berry, Pamela
Garcia-Gancedo, Luis
Hamy, Valentin
Williams, Rachel E
Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title_full Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title_fullStr Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title_full_unstemmed Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title_short Using a ResearchKit Smartphone App to Collect Rheumatoid Arthritis Symptoms From Real-World Participants: Feasibility Study
title_sort using a researchkit smartphone app to collect rheumatoid arthritis symptoms from real-world participants: feasibility study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6231853/
https://www.ncbi.nlm.nih.gov/pubmed/30213779
http://dx.doi.org/10.2196/mhealth.9656
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